...And the Bad

   Unfortunately not all my upcoming adventures are going to be so fantastic.  During the CCSVI surgery my doc saw something that may be dodgy when he was all up in my brainstem and recommended I go see this specialist about cerebellar tonsils in NYC.  I had no idea what that was, but it was in NYC, so of course I was more than ok with that.  If I have to go on a medical vacation, it might as well be someplace awesome right?  

    But soon I was brutally assaulted with reality when I brought up this cerebellar tonsil thing with one of my good friends who happens to have the same health issues as me.  He kind of blanched a little bit and then told me that "cerebellar tonsil issues" was code for chiari malformation.  Which just flipping sucks because chiari malformation, if I have it, requires brain surgery.  Bloody flipping hell.  

This is what it looks like.  More info here.

   Much research into this ensued and we decided that I would have an appointment with this super neurosurgeon (who is actually in Washington DC, not NYC) after I'm done with school in May.  But then my stupid body started doing more stupid things and I learned that those stupid things were not good signs in my neuroanatomy class. So, we moved it up to seeing the doc during my spring break.  Oh yes, I pouted, but got over it quick enough when my awesome family decided to make it into a family vacation so I could see all of them and have some fun outside of the medical stuff.  Now it's just about three weeks away and I'm really happy I pushed up the appointment.  My stupid legs have been extra stupid lately with tripping and falling when I go to get out of chairs a lot more often.  Plus lots and lots of shaky time.  I had a neurology appointment and it showed a bunch of things were getting worse in terms of reflexes and a bid in coordination.  In addition to chiari testing, I'll be evaluated for tethered cord, cervical instability, syringomyelia, and those tests would likely show anything else that would be wrong with my CNS.

   So that's where I am.   Most of the time, I'm pretty ok with things. I know I'm pretty good at getting through yucky stuff and I have a great support system.   Still, the idea of a large, painful surgery isn't thrilling.  I won't be able to get a job this summer or do some of the international trips I was pining after.  Hopefully it won't mess up my graduate school work, but it is a possibility.  I'm a little scared, but less about the surgery and more about the weakness getting worse and whether that will be progressive or permanent. 

   Daily life has a way of consuming most of my thoughts through.  Grad school gives me plenty of things to think about (and study) and do.  

   I'll be posting updates regarding these tests and surgeries on my caringbridge page since I want this blog to be more focused on fun stuff.  :0)

The Good News...

   Well well, it has been a while, hasn't it?  Now that I'm at the one year mark for many Semester at Sea milestones, I've been thinking a lot about my fabulous past adventures as well as some upcoming ones.

 Though I can't say that I am snuggling with cheetahs like I did this time last year, I've managed to keep myself busy with some smaller adventures.  I know that weather gets a bad reputation as being something mundane to talk about, but I'm thinking that doesn't apply to Boston weather.  I got my first snow a week or so after the hurricane and have been enjoying a frosted landscape many times since then.  I even bore witness to what some news stations called the second worst blizzard in Boston's history!  There was even thundersnow!  I had a great weekend exploring the campus and getting plenty of exercise "walking" through up to waist deep drifts of snow!  Every time I see the white stuff falling from the sky, I instantly become five years old and run outside to play.

Before this, the last snowman I made was on Mt. Fuji in Japan! Crazy life!

My wheelin' snowman.  :0)

That would be 4ft high drifts of snow blocking the entrance to my class...

But I made it there..

...With varying amounts of difficulty.

  I've also been enjoying some fun times with my amazing classmates.  I'm blown away by how they take my shaky times in stride and offer to give me rides so I can go out and have fun with them.  In early winter, three of us tried our hand at glassblowing.  I was nervous beforehand because I figured that wasn't exactly POTSie friendly.  I would be standing for long periods of time in a really hot room wearing long pants and sleeves   It turned out to be pretty much fine though!  I wore my cooling vest and got some help from the instructor when I couldn't lift the pipe by myself.  Just another thing on my list I realize I actually can do.  :0)

We made pumpkins! 

 On January 4th I had my third CCSVI surgery after my silly right jugular was almost completely collapsed again.  Though not thrilled about having ANOTHER surgery, I was thrilled to get rid of the vision problems, headaches, and other symptoms after the surgery.  I had only a week or so to recover before a very tired and blood thinner-full me went back to Boston.

Note: this was before the meds.

 Luckily, I had some excellent company!  My dad went with me as part of an extended layover on his way to India.  We had lots of good food and fun times.  The highlight was that I was randomly able to make the hike out to Thoreau's cabin at Walden Pond.  I have wanted to for ages, but could never get there before due to feeling yucky.  There was much rejoicing!

We had way more fun throwing rocks at ice than should be possible...

I did it!

    I have some exciting things coming up as well.  In about three weeks I'm meeting my family for a fabulous spring break trip to New York City and Washington DC!  Then, this summer, we'll be using my newfound ability to tolerate humidity to go on a long awaited trip to Hawaii.  I can't wait!  And probably the most exciting thing of all is that my longest and most excellent friend and sista from anotha motha is getting married!  So much to look forward to!

My First SASiversary

  One year ago today I was excited beyond belief, struggling with a little bit of homesickness, and meeting tons of new people.  It was the first time I stepped over the threshold of the MV Explorer, a ship that would become my home during my voyage and my happy place once back on land.  I had ambitious hopes about the voyage and myself which were more than fulfilled.  I thought I would take time on my first SASiversary to reflect on these hopes I wrote down right before I left for the trip.  What I originally wrote back in January 2011 will be in regular font and my commentary I'm adding now will be in italics.

• How to you expect to change on this trip?

  I really hope that this trip will make me more self reliant.  In some ways I already am in that I don't require much social stimulus, however I am very emotionally reliant on my family and reliant on technology for entertainment.  I always joke that I am not fully weaned from my parents yet, but it really is true.  I would like to still have just as strong as a connection with my family, but also be able to be on my own as well.

   I changed in this way far more than I ever thought possible.  SAS was a test to see if I could handle moving across the country for grad school, and since I'm writing this from my dorm room in Boston, it is safe to assume I passed the test.  My mom told me the other day that she is so happy I am finally becoming my own person outside of the family.  I really think SAS and my subsequent move helped me immensely in this area.  As for technology  I am still really into the internetz, but only if I don't have anything else to do.  Also, my friends can attest to the fact that I have lost interest in my phone.  I ended up enjoying being unreachable for a semester way too much and am horrible with texts or returning messages.  Oops.

   A past SASer described the voyage as "Life Rehab."  This is incredibly appealing to me.  I need the time to figure out my new (more healthy) life without the distraction of reddit and other technology.  I hope to have a better sense of direction of where I want to go by the end of the trip.  

   On the ship I was my usual lazy self, but in port I really pushed myself.  Five years ago I had to adjust to being disabled, but on the trip, I got to test my limits and find my slightly less restricted "new normal."  I figured a lot out about myself and how I fit into the world.  I certainly have had a dramatic decrease in existential crises since the trip.  haha

    I also hope to gain more confidence in my abilities.  Though I am pretty self confident in the personal area, I do need to work on my physical self confidence.  Being disabled and sick for the past 4.5 years has had a huge effect on what I think I can do.  I'm excited to push those limits and see how it goes.

    Hey, this has a drawback too!  Now when I don't want to clean my room or do my homework or whatever, I have a stupid little voice in my head that yells "YOU HIKED IN THE AMAZON RAIN FOREST YOU LAZY BUM!  NO MORE EXCUSES!"  That voice is a jerk.  But it also convinces me I can do crazy things like move across the country by myself and maybe live in New York City after grad school.    

    I hope to become more social since I feel well enough to get out and about finally.  It would be nice to need less alone time and be able to hang out with people more often.  I want to be able to make deep connections with people in a shorter time span than the 3-4 years it usually takes me.

   So much success here.  I didn't know "grown ups" could become as close as I was to my friends during my hormone-amped teenage days.  Now I know that grown-ups can make the best of friends too, and that it can happen pretty darn fast.  I never would have though a year after the trip, I would still be calling and writing to my friends I made on the trip, but I am indeed.  We still all pine for the day we can have a SAS reunion and have a sunset dinner together again.  

   So far, most of the above is just about my time on the boat.  I know that my experiences in port will change me, but this is such a unique experience for me, I don't even know what to expect.  I hope to think more globally and figure out tools to address global issues.  I hope I become even more comfortable interacting with people from different cultures and backgrounds.

   Yeah.  I won't even pretend I can write about all the things I learned.  In addition to the facts, it was a hundred new perspectives and ways of thinking.  I miss thinking that much everyday.  

• What are you most looking forward to?

I'm really flipping looking forward to South Africa!!!!  I've wanted to go on a Safari since I was nine years old and I will finally be doing it!  Petting a cheetah will be another childhood dream fulfilled.  I think in general, I am most excited about the animal centered experiences.  The service projects will also be really cool.  I can't wait to talk to other people with disabilities and exchange ideas!

South Africa was pretty flipping awesome.  How I pet the cheetah without hyperventilating or sobbing is beyond me.  It was an amazing experience that was years in the making.  The service projects were a crazy mix of "cool," challenging, and many conflicting emotions.  I did meet fellow disabled people most places and learned a lot about disability in different cultures   My experiences have made me want to work internationally once I am an OT because people all over the world can learn a lot from each other.

• What are you most anxious about?

I'm most worried about missing my family of course.  I've never gone even close to this long without seeing them, and no Skype or phone calls will make it even more difficult.  From the time I could talk, my family have been my best friends who I talk about everything with.  I'm worried how I will cope when I don't have someone to talk to all of the time.

   I coped by making the best of friends and having an amazing, adventure filled trip.  I think I was only homesick the first couple of days and then Easter/Passover.  So worry turned out to be not a big deal at all.

Health issues are also a source of anxiety.  Though I am mostly confident, I really won't know how my body is going to handle some of the things I'll be putting it through.  Knowing that at any point I may get dehydrated or dislocate a joint is a little scary.  Dealing with health issues in countries where I don't speak he language is pretty intimidating even though I already have some experience in this area.  I'm most worried about the heat/humidity and how I will do at very high altitude.  More than any serious health concerns, I'm worried that my health will hold me back.

I am mostly excited about the trip because I got most of my panicking out in the years leading up to this.

   My body held up like a boss.  Ok, there were those shaky times, and those IV saline infusions, and I did leave the ship on crutches...but in general, I did well.  Going to high altitude was still the dumbest thing I ever did, but I loved Tibet and would brave oxygen deficiency again in a heartbeat!  

• What will you miss about home?

I'm going to go right past people, because it's pretty obvious that is going to be the main thing.  I think food will be a bid thing.  Due to digestive issues and personal preference, I tend to eat the same things all the time.  I've been having the same breakfast for five years and it will be strange to not have access to the homey comforts of food I am used to.  Especially peanut butter.  I flipping love peanut butter.  

   Honestly, the food was the worst part about SAS.  (Not that is was that bad.)  The "peanut butter" was nasty even though it was supposedly just Skippy.  Every meal had about the same thing.  I haven't been able to eat fish since I got back home!  haha  But it's not like we starved.  The seventh deck had delicious and cheap food, so when we couldn't handle one more bite of pasta and potatoes, we could get a Cesar salad or chicken burger.  

Not having access to the internet is going to be crazy for me.  I am one of those people who is always checking message boards, surfing reedit, watching netflix, playing games, or browsing the net.  Especially since I got my smartphone,  I have instant access to so much information.  It will be good for me and also difficult to not have the whole internet at my disposal every second.  It's not just the internet itself I will miss though.  Some of the communities I'm keyed into will be difficult to leave behind such as my sickly friends and the reedit community.

   Psh, what internet?!  I did miss it when I was doing reports or when I had a question and didn't have google to answer it for me.  But in general, I didn't miss it nearly as much as I thought I would.  I also think it was really good for me to take a break from sickly communities.  That was another umbilical cord that needed to be severed so I could become a person outside of a diagnosis.  I still love my sickly peeps, but the lack of communication helped me to focus on other aspects of life and develop other aspects of myself.  As in the things that don't come with an insurance billing code.  haha

Other than that, it will probably just be familiar things, places, smells, people, etc. that I will miss.  Even as I am so excited to start this trip, I know there is nothing like home and my hometown.

   

• What will you be glad to take a break from at home?

I know I said I will miss technology, but I'm SO glad to get away from most of it!  When I was sick I began to rely on my family and technology for everything.  When I was bed bound, my whole social life was on my computer.  I'm healthier now, but it's a difficult transition to make.  Nothing like a trip around the world to get me over the withdraws.  haha

   Success.

All my commitments at home are also something I am happy to take a break from.  On this trip I will have so few things to do and to worry about.  It will be a nice vacation.

  Yeah, that's why they should call it Utopia at Sea.  Life ain't gunna be that easy or awesome until I retire to a nursing home.  haha

• What are you feeling right now?

I am so excited!  I wake up in the morning and my first thought is about SAS.  I get that thrilling feeling in my stomach which is an awesome way to start out the day.  I find myself impatient when wasting time and eager to do anything to help prepare for SAS.  I'm sure I am nervous, but right now excitement is definitely the dominant emotion.  I just want it to start!!!!!

Also, I should say that I have a hard time thinking much beyond just getting on the boat.  All these amazing places I'm going still seem like a dream.

   Ok, now you are just rubbing it in past self who still has the whole trip ahead of you.  :0)

Happy Holidays!

Happy holidays everyone!  Thanks for reading!  

"Dad, take that off!"  "I shan't!  It's Chanukah!"

I thought this was a cute POTSie holiday card!

Wheelin' it on Semester at Sea

I'm rushing off to class, but I wanted to quickly post this awesome video featuring a guy who uses a wheelchair on the current SAS voyage.   See, I'm not the only crazy one!

Picture from semesteratsea.org.

http://www.semesteratsea.org/2012/11/19/changing-perspectives-how-sas-helped-one-student-redefine-beauty/?cerror=incorrect-captcha-sol#respond

Spotlight on The Deaf Dream

  One of the most amazing things about Semester at Sea was the people I met on my trip.  Practically everyone was adventurous, globally minded, and committed to changing the world for the better.  I'm very excited to introduce you to one of these awesome people, Destiny and her recently launched organization The Deaf Dream.

   Destiny was inspired by our SAS trip to create an organization to empower Deaf individuals all over the world.  Everyone has dreams, but not everyone has an environment that will allow them to come true.  The Deaf Dream will work with individuals and communities to promote education and employment in places that are not currently set up to offer those opportunities.  As you can see on the organization's home page, it's not about helping, it's about empowering.  It's about working together and creating future leaders in the Deaf community.

Destiny and Friend on the Trip

  Start with this video, and learn more on the website!

Hurricane and Halloween!

The past couple of weeks have been a whole lot of fun!  I had been doing great and my wheelchair was gathering dust after two weeks of disuse.  Good times!   I also have been getting to know people in the dorms and in my program a lot more.

First order of business is how flipping excited I am that my boys won the World Series!  I fell asleep before the end of the game (yes I'm a granny who goes to bed at 9:00) but I woke up to a spectacular text from my Dad telling me they won.  There was much rejoicing.  And I carved this at my dorm pumpkin carving event.  Because I love the Giants.  A lot.

Gooo Giants!!!!

I started celebrating Halloween early with an OT party on Saturday.   It just reinforced how much I love the people in my program!  I went at a honey bee and was pretty proud of my last minute costume.  I went shopping for a few hours earlier that day (no wheelchair! yay midodrine!) AND made the costume AND had fun at the party all in one single day!

OT Halloween Party.  We are so flipping adorable!  

Le Honey Bee Costume (with messy room in the background)

  Then the excitement didn't stop as I spent Sunday battening down the hatches for hurricane Sandy!  It was my first hurricane so I was beyond excited!  Classes, and therefore TWO midterms, were canceled on Monday so I got to spend the whole day watching the storm and discovering tumblr.  Before the storm hit though, I was sure to make a hurricane emergency kit:

That would be: flip flops, charged phone, water, glow sticks, waterproof cameral case and video camera in waterproof case, a large and awesome book, a useless umbrella, lip gloss, and my sonic screwdriver.  

    The storm turned out to  be just ok on the excitement level though.  I'm sure those in NYC will have a different story, but I felt perfectly safe and cozy inside.

The expectation:

 The reality:

  The only bad part of the storm was that the low pressure royally screwed with my body.  I collapsed on the stairs trying to get to lunch that day and have been utilizing freddy the wheelchair ever since.  I'm hoping this is all due to the storm, because I also have headaches again and that does not bode well for my surgery free future.

Anyway, then it was Halloween!  I dressed up in my second awesome costume for anatomy lab.

I then promptly had a really horrible shaky time and spent most of lab doing my best seizure impression and then wanting to nap.  At the tail end of the lab, I started to feel better and we had some Halloween fun.  And made up dance moves to go with the muscles in the hands.  Because that's how we roll.

Halloween, anatomy lab style!

Meet George.  George is a special skeleton.  His arm is on backwards and his scapula goes up to his chin. Now George has a mustache so he is a sir.

Also, freddy dressed up for Halloween.  :0)

 Time to get ready for Friday service learning at the Boys and Girls Club.  Always the highlight of my week!  Last week the kids played Quiddich!  

Travel Products - Hydration Packs on Sale

Hi fellow travelers!  I just wanted to post a quickie here about a sale on water bottles and hydration packs.  My camelback was probably the most important thing to help me stay healthy in port!  They are usually really expensive so I wanted to share that a few went on sale.  (I don't get any kickback from this, I just thought some people may be interested.)

Check it out 

Some Recent Adventures (Part 2)

I finally have some time to finish the bit about my recent adventures.

I got TWO severe thunder storms right off the bat!  I acted the part of a tourist and took tons of pictures of the beautiful billowy clouds and then hid under the blankets with my flashlight convinced I was going to swept away in a tornado once the storm hit.

 

For my birthday (I told you I was behind) I went apple picking with the grad student organization.  It felt oh so wonderfully East Coast!  One of the girls in my program went as well and it was fun getting to know her better.

Hayride out to the apple orchards 

 I wasn't feeling too well that morning, but I perked up as they day went on.  I was a bit silly dragging my wheelchair with me because it ended up being much more of a hindrance than a help as I pushed it up and down muddy hills wile I walked.  Oh well, extra exercise!  I was feeling so pumped in fact, that I climbed every tree I could until my limbs would not lift me anymore.  I'm sickly and weak and out of shape, but I can somehow still climb like nobody's business!  In flip-flops!

I was at least 15 fit up here!  

aaaaand zoomed in.

It was a beautiful day!

The place we went was a proper farm too!  There were lots of critters there to feed and pet if they were feeling friendly.

I think they were actually going for the finger...

 Since I'm not particularly fond of apples, I took off on my own for a bit to see if I could find any pears.  I think I found the last four or five left and they were...special.  But delicious.

The cider was AMAZING!  I got an extra bottle of it and mixed it with water for the next week. (Regular juice is too sweet for me)

Purdy

The rest of my birthday was not so exciting.  I hung out in my dorm room because I didn't really know anyone that well yet and read.  Oh wait, maybe that was exciting.  For me at least.

That's me!

That night there was some rowdiness and some not so good things happened.  As a back story, I had been having difficulty with the handicap bathroom being open because people were using it constantly.  My RA put up a sign asking people to only use one of the two handicap bathrooms and that of course made people use it more.  I thought I would be clever and funny and put up some meme posters asking people to not use the bathroom in their native language: meme speak.

You can find more bathroom sign fun here.  If these don't make any sense, it would probably mean you are one of those strange creatures who has a life outside of the internetz.  

I thought it worked until that fateful night.  The next morning, I found my beautiful signs ripped to shreds and littered in the doorway of the bathroom.  Then, inside the bathroom, someone peed all over the toilet seat and surrounding area. Yes, you read that right, on not in.  Then there was some mysterious bodily fluid material smeared on the doorknob.  So much fun to wake up to right?
  I'll just fast forward past and say that luckily nothing like that has happened since.  I was pretty upset about it at first, but then realized that the mild destruction was more likely fueled by a drunken whim than anything against me or my (awesome) signs.  I wouldn't say I'll every be voted most loved person in the dorm, but it's not as cold of an atmosphere as it was right after I put up the signs.  In fact, people are even taking on the herculean task of walking a few feet extra distance down the hall to use the other bathroom.  They all should get metals.   There are even some people who seem pretty cool.  So, things are looking up.

Then there is this whole graduate school thing that I came here for.  I am very pleasantly surprised that the classes are not as hard as I thought (dreaded).  I've been through one round of tests and papers so far and things went extremely well.  It's a lot of work.  A LOT of work.  But all that work pays off in good grades and much learning.  Plus a lot of it is group work which is actually fun when you're in a program with a bunch of smart, dedicated people.

I suppose there is more to write, but night time meds are kicking in which means it took me a half and hour to write that last paragraph.  Also, there's no telling what I would write next if I kept going so I better wrap this @($&(&#HSBVBSBcskjbiugifuofuwohc #(RY#pn....they found Amelia Earhart in a Jones green apple soda can?????  With a pet tyrannosaurus rex and a pile of purple cheese????

Goodnight world.  :0)